Jump to content
ACN Latitudes Forums

Stimming vs complex tics


Claire

Recommended Posts

efgh,

 

I'm not too sure about the age for TS, it seems like most stories I have read the children seem to start about age 6, but statistically I don't know.

 

Our son is currently on B-6 and Zinc repletion(for the pyroluria) , calcium/magnesium, vit.C, TMG, Chlorella, Evening Primrose Oil, Vit E, Molybdemum, B12 and transdermal magnesium sulfate along with transdermal glutathione.

 

His tics stopped about a year and a half ago. When we started eliminating heavy metals things got much worse and then a little better, but the real break through with him seems to have been Flax Oil. Within two weeks of being on it his tics subsided. Interestingly pyrolurics have a need for omega 6's. He has really developed a strong dislike for the oil (which was in raw li

Link to comment
Share on other sites

  • Replies 34
  • Created
  • Last Reply

Top Posters In This Topic

efgh,

 

I'm not too sure about the age for TS, it seems like most stories I have read the children seem to start about age 6, but statistically I don't know.

 

Our son is currently on B-6 and Zinc repletion(for the pyroluria) , calcium/magnesium, vit.C, TMG, Chlorella, Evening Primrose Oil, Vit E, Molybdemum, B12 and transdermal magnesium sulfate along with transdermal glutathione.

 

His tics stopped about a year and a half ago. When we started eliminating heavy metals things got much worse and then a little better, but the real break through with him seems to have been Flax Oil. Within two weeks of being on it his tics subsided. Interestingly pyrolurics have a need for omega 6's. He has really developed a strong dislike for the oil (which was in raw liquid form) for this reason I have swithced to using evening primrose oil.

 

Jennifer

Link to comment
Share on other sites

Guest Guest_efgh

Jennifer

 

Thanks. Which brand/dosage of flax did you give your son?

 

Do you intend to continue with these supplements even though his tics are under control?

 

thanks

Link to comment
Share on other sites

Jennifer, below is one of my original posts. I would love your advice since our situation does sound alike. I did the pyloria test from home and it was negative. think it was a three or something like that. I have to recheck. Do you also give fish oil? We are not doing flax seed right now. How much do you give your son? Maybe we should add primrose and flax seed to our daily fish oil. Also how much TMG do you give per day? We were giving one until we ran out. My son is getting stuck so much these days. Everytime he gets excited about a toy or cooking with me, he can barely do the task because he is facial grimacing, making elongated vowel sounds, repeating things, and then he just sort of snaps out of it. I feel sad for him because he is just so excited to help, but it seems to interfere with what he is trying to do. He also just walks by his sister with his arms spread with no control over knocking her down. He doesn't really want to knock her down, but he just does. It's a control problem. The high vitamin B was helping this tremendously (calming him mostly), but increasing his tics later it seemed. Anyway, if you have any ideas I would appreciate it. Thanks for the advice. We live in Chapel Hill, NC and there are tons of Montessori schools here. I will check them out...thanks for the advice.

 

 

Hi all! I really need some advice. I posted last week as a new member. My son is three years old, and I believe we are the youngest case of Tourette's ever! Maybe not, but I haven't met anyone dealing with these tics so young. In my previous post, I noticed tics since he was seven months old. He did this arm extension tic where he would tense his arm and bear down sometimes all day long sometimes not at all. He had TERRIBLE acid reflux as a baby, spit up all day long, and we thought even back then that the movements were due to the stress of the reflux. As he got older he did some sniffing, facial grimacing, whole body tensing, jumping up and down when excited or stressed which can happen all day long. In fact, we have not ever had a tic-free day. The vocal tics started when he was about 2. He talked in full sentences when he was two, but a lot of repeating his own words and others. However, he did have his own sentences, he would just get "stuck" a lot. I found that distraction could break the repeitition, but then sometimes he would get stuck on the distraction. He has always been extremely moody as well, but when he's happy he is great fun...everybody loves his personality. He is also incredibly smart, and was just tested with a verbal IQ of 140. At first they thought maybe Asperger's, but definitely not now that they have seen wonderful social skills. His biggest problem in the social arena is his need to touch, and sometimes aggression with other kids especially his younger sister.

 

However, we just had him tested six months ago for allergies and he was highly allergic to corn and dust mites, and eliminating that has been such a blessing. We took ALL corn and corn derivitives (thanks to the corn forum) out of his diet, and covered his beds..etc. His mood has dramatically changed. He used to wake up from naps unconsolable, he wouldn't let you touch him, difficult with transitions...it was so hard. He only had a scratch test, but was not allergic to milk or wheat. However I thought for sure milk would have showed up (I am going to have the IGg done soon) because the child would drink milk and eat nothing but yogurt all day long if allowed, his terrible reflux as a baby. He was exclusively breast fed until eight months, but I never eliminated anything from my diet (terrible mistake listening to doctors). Nevertheless, his disposition has changed dramatically since these dietary changes. I don't know if the wheat has any real affect, but definitely the milk and corn. We also don't do any artificial flavors, coloring, and if any of you have also truly elimintated all corn dervitives, you know that it is easy to eliminate all perservatives because you can't buy anything processed whatsoever. Our diet is extremely limited. We eat meats, fruits, and veggies, and I make soups. That's it. I make all my own bread.

 

Last week, we eliminated screens for a week. We never did a lot of TV in the first place, but we didn't see any difference. However I will say that he is much fussier if he watches TV. We used to let him watch a morning TV show before school, but I stopped this long ago because he would get so grumpy. This happened long before I knew anything about TV and Tourettes. We only let him watch one hour of TV on Fridays as a treat. We have just started trying to eliminate salicylates this week. He used to eat tons of raisons, grapes, tomatoes so we'll see if this makes a difference. How long should we do this before we see if it does?

 

We also started Bonnie's Vitamins four days ago which is the real reason for this email. Does anyone know what the sources of cellulose and silica are??? Sometimes these can be corn-dervied and yesterday my son has some diarrhea. As anyone with a corn allergy knows, things can be corn-free but almost everything is dervied from corn. I need to know the sources. I will email Bonnie unless someone knows here. Before Bonnie's we had him on Super Nu Thera by Kirkman (these are a multivitamin which large does of B6 and Mg), and instantly we saw a more content child, but it did little for the tics. Sometimes four hours after taking the vitamin I would notice his tics being more jerky which concerned me. That is why we decided to go with Bonnie. Bonnie's actually contain less B6 than the SNT. So far (only four days later), I haven't noticed in decrease in the tics, but maybe an increase in vocal things (lots of vowel sounds, getting stuck). Because my son is only three, we have been using flax oil from Spectram Naturals (one T per day) instead of the fish oil. I just found some liquid fish oil from Kirkman that I am going to try now. The only other thing he gets are a probiotic (one in the morning). Should I do anything else for yeast? He has been heavily dosed with antibiotics since his premature birth. My son weighs 38 lbs. We can go up to 10 pills of Bonnie's per day, and are doing six right now. I am really worried about his vocal tics right now.

 

We have an appt. with an allergist Dec. 1st who will do the yeast, glutothione, mercury, IGg tests...etc. I want to get that done. I also have a pyroluria kit now that I will do. Does anyone have any suggestions?? My sons tics are at their worse. Should I try carnitine??? Everything we try has to come in capsule form and broken into a drink. We also are doing Rice Dream, but it contains so much sugar that sometimes I think that makes his tics worse. However, I have to be able to give him something to drink to mix his pills with. My family thinks I'm totally nuts and overboard so I need some support and help from you all! Thanks so much, and I really apologize for making this so long. I just thought the more details you had, the better you could help!

 

Natalie

Link to comment
Share on other sites

Guest Guest_Jennifer

Dear ntbowen,

 

From your post it sounded like you were going to be getting more tests done. Have you received the results yet?

 

For starters if yeast is an issue, it needs to be addressed. A healthy nervous system starts in the gut. If the body can't break food down properly or if there is yeast overgrowth, the rest of the body systems suffer.

 

Our son is allergic to wheat, spelt and dairy. We were following a gluten free diet for a few months which did wonders for his moods and general attention (he can be very clumsy and not notice what is going on around him). I was told about a digestive enzyme by his doctor at Pfeifer called Peptizyde for gluten, I have been very happy with the results. Many parents are not following the GF diet any more with these enzymes and are having great success. They also have a broad spectrum enzyme called Zyme Prime as well as a No-Phenol enzymes for high Phenol foods. The no Phenol enzyme has also been found to kill yeast. When I put my son on it he had what I know now to be yeast die-off. The company that makes these enzymes is Houston Nutraceutics. There is an awesome web-site called www.enzymestuff.com they talk about these Houston Enzymes on there as well as some other types to help parents decide what would be a good choice for their child. They also talk about a book from Karen DeFelice called " Enzymes for Autism and other Neurological Conditions", which I just ordered an am very anxious to read.

 

It is good that you are doing an IGg test, the skin test is not very accurate. We had our son do the skin test when he was 6 and the doctor said he never saw a more negative result. The IGg test proved to be an entirely different story.

 

As far as dairy goes we made the choice to switch to raw milk. And I have been very happy with it. It seems that the main problem with dairy is that when pasturized, the proteins are ruined. The high temperatures make them toxic for the body. www.mercola.com has some very interesting articles regarding milk. Raw milk is so full of healing enzymes and nutrients.

 

I am using liquid TMG with folinic acid and b-12 from Kirkman Laboratories. It is raspberry flavored. Our son is taking about 350 mg a day split morning and evening.

 

We were using just fish oil in the beginning, but then started incorprating the flax oil with it, he did much better. It seemed just fish oil made things worse. I wouldn't hurt to try adding omega 6's. If you opt to use Flax Oil, I would go with Body Bio 1-888-320-8338. Their oil is organic, cold pressed and processed in an oxygen free environment. If flax oil is not processed correctly you will end up with rancid oil undetectable to the palate, but terrible for the body.

 

Have you tried Kirkamn's Super Nuthera with 25 mg of p5p? They have so many different formulations. The B6 is 100mg and the B6 p5p is 25mg. I know one of their products has over 200mg of B6. In order to convert B-6 the body needs cysteine. The p5p formulation is nice because it is the bioavailable form.

 

Also, in some children B-6 can stimulate the nervous system and cause hyperactivity, magnesium is supposed to help counteract that. I kind of think that in children with tic disorders anything that has the potential to cause hyperactivity can increase tics.

 

We went through so many ups and downs with our son. I don't think to this day I have been ever able to pinpoint any specific agravators. You think you've got it figured out and then something unexpected comes along that blows your whole theory. I will say that for the first few months of nutritional therapy, things got much worse. It is very difficult to decifer if there is some sort of reaction going on or if in the process of the brain attempting to rebalance itself things get temporarily worse. The best thing to do is introduce one nutrient at a time and monitor the reaction. During detox things can certainly get worse, which in a way is a good sign. If you aren't allready, keep a journal, that helps quite a bit. I was just looking over some of my journal entries and realized each time my son had been on antibiotics he regressed terribly.

 

 

 

 

 

Jennifer

Link to comment
Share on other sites

Guest Guest_Jennifer

efgh,

 

I used 1 tbs. flax in morning and evening. I ordered the oil from Body Bio.

 

I listed their number in my post to ntbowen.

 

Jennifer

Link to comment
Share on other sites

Jennifer, thank you so much for taking the time for such a detailed response. We did treat for yeast with Kirkman's Yeast Aid and two probiotics for two weeks. Now we just do one probiotic a day. We are currently being tested for yeast so we'll see if it's still a problem. We haven't got the results back for the heavy metals, but we sent the hair test off. The DAN doctor we are seeing seems pretty good, and is all about going slow as well. I guess before we actually saw him, I really wanted a quick fix trying everything.

 

We did use Kirkman's Super Nu Thera. At first we were blown away. For the first time ever, he would play by himself, was sort of at peace playing with his toys..etc. However, I would notice that after about four hours of taking it, he began jerky arm and body movements that I had never seen before. When I stopped it, they stopped. However, I am seeing a little of those same movements now so who knows for sure but they did increase his tics. I loved his mood on them though and wish we could take them. The Mg is interesting though. We don't have him on Mg. We have Mg Taurate from Bonnie left over from that program. I am considering adding it although her TS PLUS Control, we will probably never try again. How much Mg Taurate should I give him if it's his only source of Mg? He's 40lbs. Our TMG is also from Kirkman and contains folic acid. What does the B12 do... ours doesn't contain B-12. We can never use Kirkman's Flavored liquids because they contain corn derivitives.

 

Cameron is currently on Spectrum Complete by Kirkman which does contain P5P (very small amount though...5mg and then 5mg of regular B6). It's seems like a good multivitamin. It I agree with you about P5P. I am convinced that my son needs the active form of B for his body to utilize it. The vitamin also has 10 mg grapeseed extract, 15mg of inositol, 25 mg of DMAE, 15mg of Coenzyme Q and 100 mg of Taurine. If you have the Kirkman catalog, you can check it out. If he is getting 100 mg of Taurine this way, does this affect the Mg Taurate dose I should give him? This vitamin seems pretty benign. I don't see dramatic things like I did with the Super Nu Thera, but he is certainly not aggressive and unmanagable like he was with Bonnies.

 

We do have him on Kirkman's digestive enzyme currently (both their Enzym-Complete/DPP-IV and Phenol Assist), but I am definitely going to check out Houston. Do you think their better than Kirkman? The DPP-IV part of Kirkman was supposed to help with the gluten/dairy. I would love to not have to stay on the gluten/casein diet forever. However, being truly allergic to corn, finding things is still hard. Thanks for you input!

Natalie

Link to comment
Share on other sites

Natalie,

 

2 weeks of yeast treatment? Our DAN doctor had do 3 months of Nystatin before he retested. Also, I know their is some controversy, but Pfeiffer (and Dr. McCandless), though they do the hair test, say that kids who have issues excreting metals (e.g. they retain them too much) can show low on a hair test. So if it is negative, you might consider a blood test.

 

Also, if he is undermethylated, I think DMAE is supposed to be bad for him.

 

 

"If you can confirm the presence of undermethylation, the patient should benefit from (1) aggressive doses of l-methionine, calcium, magnesium, along with augmenting nutrients zinc, B-6, Inositol, Vitamin A & C and (2) strict avoidance of folic acid, choline, DMAE, and copper supplements". We are back to the methylation testing comment I made--Jennifer and I both had this test for our kids.

 

http://www.alternativementalhealth.com/art...walshMP.htm#Met

 

 

Magnesium is the most common vitamin deficiency, per our DAN doctor. If you want to be conservative, you can check out these 'standard' dosages by age, and of course ask your doctor!

 

http://healthinfo.healthgate.com/GetConten...&chunkiid=21795

 

Claire

Link to comment
Share on other sites

Guest Guest_Jennifer

ntbowen,

 

I wanted to use taurine for our son as well, but the doctor cautioned us because it is a detoxing amino acid. We are allready using things to detox and she felt adding the taurine would be too much. Having said that you may want to reduce the taurine or hold it for a while, he could be having a detox reaction. It is also good to have the liver detox pathways tested to make sure they are working correctly and can handle the detox. Great Smokies Labs does it.

 

We had several hair analysis done on our son. The very first one should almost toxic levels of mercury (we did it a few months after his immunizations). We did two more spaced about 6 months apart and the mercury was gone. We thought that was good news, but last spring we did a DMSA challenge test, which involves one dose of DMSA and a 6 hour urine collection. To our surprise quite a bit of mercury showed. I guess the point I'm trying to make is that allthough a hair analysis can be of some guidance, it is not at all definitive. Mercury and Lead both hide in organs or bone. Once that occurs it isn't circulating freely in the bloodstream and won't be picked up in the hair.

 

I checked the catalog and notice that the spectrum complete contains glucosamne sulfate. If your son has sulfation issues you want to avoid any sulfate ending supplement. You may also want to talk to your doctor about checking histamine levels. If it is high, supplements such as folic acid, choline, niacin are to be avoided..they exist in other forms that won't increase the histamine levels.

 

And yes, I do believe that the Houston enzymes are the best. The feed back has been phenomenal.

 

You mentioned that you are re-checking for yeast. Yeast can be hard to get rid of. The average time depending on the severity of the gut can be from 6-18 months. You may find that yeast is still a problem. I know I always gave our son probiotics, yogurt and acidophilus enriched milk after being on antiibiotics, but he still has a yeast issue. After reading the enzyme stuff web site, I realize that I wasn't nearly as aggressive as I should have been.

 

You may want to look at the Super Nu-thera with 12.5 mg of P5P, it does have zinc sulfate and manganese sulfate, but the amounts are minimal.

 

Jennifer

Link to comment
Share on other sites

Guest Guest_Jennifer

The Histamine issues and Methylation issues that Claire and I mentioned are the same thing. If someone has high histamine levels then they are consided under-methylated. So the supplements that Claire mentioned to avoid should be avoided with high Histamine.

 

 

Jennifer

Link to comment
Share on other sites

That was very informative. We have our son on a nightly benedryl right now (1/2 tsp) while we are at my parents house. Their house has a ton of carpet so it was completely necessary. I had this Benedryl compounded, and it seems to help. If one has high histimine levels, wouldn't it be could to have them on a low dose histimine. One woman I spoke with told me that her sons tics decreased 90% with Singulair. We can't take Singulair or hardly anything that cannot be compounded (which is why Benedryl is what we take) because of the corn issues, but this just got me thinking.

 

I haven't seen the 12.5 mg Super Nu Thera...I will definitely look into that. What multivitamin is your son on (Claire and Jennifer)? I have a normal multivitamin from Kirkman but it doesn't contain any P5P. However, I have P5P by itself but it only comes in 50 mg tablets that I've found so it's hard to administer.

 

Is Folinic Acid different from Folic Acid? I was thinking about the TMG we were on which does have folic acid and many of the multivitamins have folic acid as well. What affect does TMG have on your son? What form of Zinc is best to give if I gave it by itself? ONe more, what brand of Evening Primrose do you use and how much? Sorry to keep pumping you with questions...hopefully I can give back someday!

Link to comment
Share on other sites

Guest Guest_Jennifer

Natalie,

 

Benadryl is an anti-histamine, it reduces histamine levels. The problem with using a drug long term is you wonder how it will effect the liver or other organs. Pfeiffer uses supplements to reduce histamine naturally. A great supplement to reduce histamine levels is good old Vitamin C. You may want to call the Linus Pauling Institute 1-541-737-5075, they have got great info on the benefits.

 

Folinic Acid is a variation of Folic Acid that is acceptable for high histamne individuals. I don't have my son on a multi-vitamin. It is impossible to find the exact combinations of the correct forms that he needs. He is taking specific nutrients combined in two capsules that Pfeiffer put togther for him. And the TMG and Cal/Mag I buy separatly.

 

The TMG seems to help him focus and concentrate better. It also seems to aid in calming him down.

 

I use evening primrose oil from Body Bio, I give him one capsule a day which is equal to 130mg of GLA, 950mg of Linoleic Acid, 80mg of Oleic Acid.

Link to comment
Share on other sites

  • 3 weeks later...

Jennifer,

What type of probiotic do you use for you son? We have been using Kirkman's Pro-Bio gold and giving one per day. I am just running out and am about to place an order...what would you recommend and how much? Also do you know of a good B complex brand that would have P5P in it? I really want to do all the vitamins separately this time so I can know how he reacts...although his mood is SO much better on Super Nu thera! I miss it!

Link to comment
Share on other sites

Guest Guest_Jennifer

Natalie,

 

The probiotics I am using can be found at www.maxamlabs.com. The probiotics are in a gel cap and contain the original potency of the raw food state without having been dried. For a child that cannot swallow the capsule you can cut the tip and squeeze the paste in their mouth or mix it with juice etc. As far as amounts go I would start with one and see how he tolerates it and gradually increase. Jim Cole the president of the company is really good about talking with parents and offering help on dosing.

 

Maxam's web-site has a good explanation of the product. Maxam also has a B-Max product that contains the precursers of all the b-vitamins 1-24. They don't have it on the web site, but you can call them for more info. 1-800-800-9119.

 

The first day I used the product on my son he slept till 11:00 in the morning!! I don't like to use the standard B-complexes because I have not been able to find any without folic acid.....folinic acid should be used in cased of high histamine. This B-Max product is a spray and is absorbed orally. It also cleans up the receptor sights in the body. Because of toxins, many times the vitamin receptors get clogged affecting the body's utilization of the vitamins taken. We've used the B-max now for going on 2 months and so far I am very happy with it.

 

If you want the P5P, Kirkmans has a 50mg P5P capsule with 22mg of magnesium, you could open the capsule and break it into smaller portions.

 

Hope this info. was of help.

 

Jennifer

Link to comment
Share on other sites

Thanks for the info...I will look it up. I really feel like Cameron needs the P5P to utilize the B6. He really responds to it so I would worry that he would not be able to use a precursor. What do you think about that? Since we have started over that only thing he is on is the Flax seed oil from Body Bio. Since taking him off vitamins, moving, new paint, we are having an awful time. He has been very aggressive with me and his sister. It's pretty disturbing. He has always been a child who is impulsive and needs to be watched closely on the playground, but now I'm scared to take him anywhere. He is also have a terrible time with transitions (won't get in the car, then won't get out of the car)...total standoffs just like before we discovered all the allergies and started vitamins.

 

I thought the next step would be the digestive enzymes because he stools are showing he is not breaking down food very well, and this may alter the vitamin course. I ordered Houstons (three of them) and will start them next. I will also be doing the probiotic and flax oil. What do you think I should do after the digestive enzyme? B? C? We have an appointment in another month with a DAN doc but we have to get him back on vitamins because he is so hard to live with right now. I do want to add one thing at a time this time though that's why I am hesitant about the SNT even though it really did improve his mood. However he could have had bad reactions to other ingredients because it didn't do anything for tics or stimming behaviors. Thanks for listening.

Natalie

Link to comment
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×
×
  • Create New...